🎨 Calling all budding JUNIOR ARTISTS from the rare disease community 🎨
Image: creative comms 💫 PLEASE SHARE WITH YOUR RARE FRIENDS AND COLLEAGUES 💫 The March 2025 issue of the EMWA Medical Writing journal...
top of page
SCIENCE NEWS BLOG
Search
heathermason
Sep 23 min read
Is accessibility really that bad?
💡 This weekend, I have had what one would call a lightbulb moment and a new raison d'être. It isn't anything that hasn't been discussed...
13 views0 comments
heathermason
Jun 282 min read
International Phenylketonuria (PKU) Awareness and Neonatal Screening Day
PKU awareness day is observed every year on the 28th of June, aiming to raise awareness of the condition. PKU is a rare genetic disorder...
6 views0 comments
heathermason
Jun 181 min read
Use of β-Hydroxybutyrate salts in children with multiple acyl-CoA dehydrogenase or pyruvate dehydrogenase deficiency
Today was a good day. I received the live link to a manuscript that I have been project managing. This one was a labour of love,...
4 views0 comments
heathermason
Jun 91 min read
Batten Disease Awareness Day 2024
To celebrate Batten Disease Awareness Day 2024, we are wearing orange. Our family would like to show support to all families touched by...
4 views0 comments
heathermason
May 281 min read
Batten Disease Research Survey
In partnership with the Batten Disease Support, Research, & Advocacy Foundation, the Kennedy Krieger Institute are leading a stakeholder...
0 views0 comments
heathermason
May 152 min read
MPS Awareness Day is Today. Wear it Blue!
This day is dedicated to raising awareness of mucopolysaccharidoses (MPS) and related conditions. Image generated by AI using CANVA MPS...
1 view0 comments
heathermason
May 132 min read
International ME Awareness Week
Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is thought to affect between 0.2-0.4% of the UK population....
1 view0 comments
heathermason
Apr 251 min read
How can a medical writer support the rare disease community?
Raquel Billiones, PhD and myself have been invited to moderate an Expert Discussion Group, at the upcoming European Medical Writers...
2 views0 comments
heathermason
Apr 31 min read
EMWA Spring conference is nearly upon us.
The European Medical Writers Association (EMWA) 2024 Spring conference is almost upon us. Raquel Billiones and I will be moderating the...
5 views0 comments
heathermason
Mar 211 min read
World Down Syndrome Awareness Day.
This is more of a personal post than a professional one, but it is World Down Syndrome Day, and in the spirit of my professional...
6 views0 comments
heathermason
Feb 291 min read
Rare Disease Day 2024
Happy Rare Disease Day 2024!!!!! Show your stripes! Following the rare disease initiative we started at the beginning of February, I...
12 views0 comments
heathermason
Feb 281 min read
European Haemophilia Consortium EHCucate application
Just in time for Rare Disease Day . The European Haemophilia Consortium team have published another topic in their FREE patient education...
2 views0 comments
heathermason
Feb 191 min read
Last Day of Rare Disease Stories
Unfortunately, yesterday was the last day of the rare disease initiative I have been doing with the rare disease community in February....
8 views0 comments
heathermason
Feb 181 min read
I am Mias, and I have GAMT deficiency
Today on day 18 of our rare disease awareness initiative, we have another birthday. HAPPY 3rd Birthday Mias!! Mias's mum Carien,...
35 views0 comments
heathermason
Feb 171 min read
Young Ambassadors for Rare Diseases
On day 17 of our rare disease initiative, I will not be writing a personal story, but some insight into the young voices of the...
15 views0 comments
heathermason
Feb 161 min read
Aplastic Anaemia
Day 16 of our rare disease awareness initiative. We share the story of Allison's father, who had Aplastic Anaemia. Accurate information...
17 views0 comments
heathermason
Feb 151 min read
International Angelman Day
Today, as we are half way through our rare disease awareness initiative, a little reminder of why we are doing this. The build up to Rare...
19 views0 comments
heathermason
Feb 141 min read
I am David, and I have Hunter Syndrome
On the 14th day of our rare disease initiative, I have the privilege to present David, who, at 36 years of age, is the oldest person...
27 views0 comments
heathermason
Feb 131 min read
This is John's story of Spindle Cell Sarcoma
This photo by unknown author is licensed under CC-BY-NC-ND Today, on day 13 of our rare disease initiative, I wanted to share John's...
34 views0 comments
bottom of page